15 December 2021
SPHN is building a dynamic, scalable network of data providers to leverage the potential of health-related data for the benefit of society. Data generated through SPHN funds are considered to be a common good that should be made broadly accessible to all eligible parties. SPHN therefore encourages its grantees to share data resulting from their projects with other organizations to further advance research and innovation in personalized health.
During the first funding period of SPHN (2017–2020), collaborations were largely focused on public institutions such as the university hospitals and academic research institutions. For the second phase of SPHN (2021–2024), it is likely that partnerships also with private actors will be realized. Such partnerships between publicly funded institutions and private providers in medical research are not new. Within the frame of the initiative, access to and processing of health data however must be based on fair and transparent rules to ensure the benefit of all stakeholders, including and especially the public.
The challenges of sharing data between public and private entities must be carefully balanced against the expected benefits and opportunities. Based on scholarly analysis and comprehensive stakeholder consultation including public and private actors, the ELSIag has thus developed guidelines on ethical health data sharing in PPPs. They provide guidance for SPHN-funded projects and private sector entities who intend to establish PPPs.
The guidelines aim to ensure that PPPs with SPHN involvement comply with the SPHN Ethical Framework for Responsible Data Processing (2018) and aim to support researchers with the negotiation of ethically robust, patient privacy conserving and fair conditions for PPPs. The guidelines provide an important supplement to the necessary legal agreements.
More information on the guidelines and ELSI activities can be found on the ELSI project page.